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Should you worry about missing the point of ALS challenge?

Amanda Cuda
| on August 22, 2014

The health concern: Though this column usually highlights a disease or another health scare, the focus of this month's Should You Worry? is a health awareness campaign -- namely the "ice bucket challenge." The campaign asks participants to either dump a bucket of ice water on their heads (and post a video of said event) or donate money to the ALS Association.

The association provides equipment and services for those with Amyotrophic Lateral Sclerosis, more commonly known as ALS or Lou Gehrig's disease. ALS is a progressive neurodegenerative illness that affects nerve cells in the brain and the spinal cord. Those with ALS may eventually lose the ability to move, speak, swallow, breathe and do other basic tasks. The average lifespan of an ALS patient is two to three years after diagnosis. As many as 30,000 Americans may have ALS at any given time. In Connecticut, 70 new patients are diagnosed every year and about 70 die every year in the state due to the illness.

Ideally, those given the ice bucket challenge will both perform the stunt and donate money.

Why it's in the news: During the past few weeks, the ice bucket challenge became an inescapable phenomenon, with everyone from Oprah Winfrey to Conan O'Brien to local politicians and everyday folks dumping chilly liquid on their heads in the name of charity. Between July 29 and Aug. 20, the ALS Association received more than $30 million in donations nationally because of the challenge. Last year, during that same time period -- generally a slow one for charitable giving -- the association received $1.9 million in donations.

The money will go to research, as well as wheelchairs, caregivers and other services that ALS patients need. "To have this come about in the middle of August has been a boon for us," said Mike Burke, executive director of the Connecticut chapter of the ALS Association, which is based in Milford.

So, should you worry?: Well, unless you drop the bucket on your head (and, yes, there are dozens of YouTube videos of people doing just that), you probably don't have to worry about the actual challenge. But some experts worry that people who get swept up in the goofy fun of the challenge might miss its underlying message.

"I worry that, when things do catch on and become viral, the message does get increasingly lost," said Elizabeth Barfoot Christian, assistant professor of communications at the University of New Haven. "Viral messaging and viral campaigns are great for fast results, but I worry about the long-term. Are people going to forget?"

As an example, she pointed to the colored "awareness ribbons" associated with causes ranging from breast cancer to AIDS to Alzheimer's disease. The pink ribbon, which represents breast cancer awareness, is arguably the best-known of these, and Christian said its omnipresence in breast cancer awareness marketing has diluted its effect.

"Now, when I see a pink ribbon, it has almost no impact on me," she said.

And for all the noise the ice bucket challenge has made, ALS is just one of a vast number of health-related causes that need help, said Summer McGee, director of the health care administration program at the University of New Haven. McGee said it's positive to bring attention to ALS, which is often overlooked and under-discussed -- particularly when compared to breast cancer and heart disease. But there are many other diseases that fall into that category, McGee said, including diabetes and stroke. They shouldn't be forgotten just because they haven't yet been attached to a flashy awareness campaign. "This is just one part of the conversation we need to be having," she said.

Burke conceded that, for some people, the appeal of the challenge has less to do with altruism and more to do with the daredevil aspects of the stunt. "Is it starting to get watered down? Yes," he said.

But the bottom line, Burke said, is that the challenge is working. It's raising money, and people have expressed renewed interest in participating in walks and other events that raise awareness and money for the association. Burke said there's also been more interest from patients wanting information on the services the association provides. Given how much good the campaign has done, he said "I'm not concerned if it's become less about the mission and more about the fun of dumping ice water on one's head."